Being A Young Adult With Half A Heart In 2021

Evie is 24 and lives in Cornwall with her partner and French Bulldog. Evie talks of her experiences living as an adult with half a heart during the pandemic and lockdown.

During the first lockdown I had to move back home and shield with my Mum. Dad and my brother moved out and my partner stayed at his parents. It was an odd time living back home and slightly nostalgic that it was just Mum and I. At times it was tricky not being in my own space but we made the most of it, drank plenty of gin and made sure to enjoy every day as much as we could. 

 

Things took a dramatic turn in December when I was rushed to Bristol hospital as I had chest pains that had lasted all day. I carried on working and tried to ignore them hoping they would just disappear but instead they got worse so I called 111. The call handler said I should have called 999 and got an emergency ambulance sent to my house. My stats weren’t great and they weren’t happy leaving me home so I had to go with them to hospital.

 

It was odd riding in the ambulance alone but the paramedics were lovely and chatted to me the whole way up. 

Once we arrived at Bristol we had to wait in the ambulance for an hour until a bed in A&E was free, I found this a rather odd experience especially when the nurse kept coming out to the ambulance to update me on the situation, she must have been freezing! I was finally wheeled in to A&E and had my own room which was nice. A&E was so quiet, I could just hear the clock ticking in-front of me. 

 

I was moved to the cardiac ward late that night and again had my own room. It was so surreal being in hospital alone. I was there for 2 nights and was constantly on FaceTime to Mum or Shaun. In the end they couldn’t find anything different with me so I was discharged on the third evening. Walking through the hospital to go home was very weird, there were a lot of dark rooms and hardly any people walking around. It felt like a closed down office block. If I can choose next time I don’t want to be in hospital during a pandemic. 

 

I’m ready to go back to normal. I’m currently furloughed from the coffee shop I work at so I’m looking forward to having a routine back and working again. I’m more nervous about keeping up with the hopeful socialising as I’m so used to getting into bed at 9pm now. 

 

It’s so important to raise awareness of the issues that people with half a heart face to show others they are not alone. This provides a support and a future hope. I also think it’s so important to keep it high profile for the medical arena so more money and resources can be put in to the conditions. Equally, for more hospitals staff to know what they’re looking out for when it comes to a diagnosis. 

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    "We will never forget hearing the words "he might not survive.""But Loki showed us he was a true fighter.""Sometimes I feel people forget how serious his condition is, because "he is doing well" yes and showing everyone he is battling on, with the biggest smile, the cheekiness and his little ways but yet just one little thing could mean he could end up back in hospital".Shared by LHM member Emma, heart-mum to Loki here who was born with HLHS. Thank you. ... See MoreSee Less

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    "We spent Jordan's 12th birthday at Blackpool Pleasure Beach, he's a real adrenaline junkie! (We did, of course, get the green light from our cardiologist first!)Jordan's first few years were rough, he spent more time in hospital than at home. He was so poorly for years and needed a wheelchair, oxygen and feeding tube for over half his life. Fast forward to now, Jordan has been stable for the last few years. Sometimes I forget he has half a heart, not because we have forgotten, but because he is living life to the full. Jordan still has challenges in life related to his heart, but we have embraced that our "normal" is different and we welcome that into our routine.We have gone from living out of suitcases hours away from home to feeling lucky and cherishing every moment whilst things are like this x."Shared by Elis, heart-mum to Jordan here, thank you. #mynormalisdifferent ... See MoreSee Less

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